On Thursday we celebrate World Cancer Day. The International Union Against Cancer (UICC) will launch its new campaign ?Cancer can be prevented too?. This new theme focuses on how the risk of developing cancer can significantly be reduced through simple measures related to tobacco use, alcohol consumption, sun exposure, healthy weight and protection against cancer-causing infections. It is a day to remind us of the 28million affected by this disease worldwide and how we can lower our risk through prevention methods.

One of the major barriers to diagnosis and treatment is stigma. The United States has reduced the stigma of cancer greatly in the past 50 years, but in many countries-developed and underdeveloped-stigma is a barrier that can lead to late diagnosis and, in turn, death. Please view the video below and let us know if you or a loved one has experienced stigma related to cancer.

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Cancer can be a death sentence in terms of social relations in many uneducated/less-well-educated societies.

I was born in rural Bangladesh to well-off parents. When I was in primary school, the principal advised my parents to send to to a better institute in the city where I would get a better education. He thought I would be underserved and not well tested with the resources he had. After completing school, I was able to go to the US to study engineering. I eventually got a job there, and after some time, moved to Canada. I was in my late 20s by then. It was at that time that I was diagnosed with testicular cancer. The good news for me in terms of treatment was that the cancer was detected in very early stages and the treatment I received was successful.

The bad news was that in my (parents’) society, cancer is considered as a death sentence because the general consensus is that cancer is untreatable no matter how much treatment you receive. I was virtually cast out of the family. My (parents’) society is very conservative. You see, in my (parents’) society, the parents arrange the marriage. The actual bride and groom get very little say. Marriage does not happen between two persons. It is a union of two (extended) families. Families negotiate and bargain before a wedding can go through.

My friends were all married. Some even had kids. I didn’t. No one in their right mind would suggest a proposal to my parents since I had been diagnosed with cancer. I was soon the laughing stock of the village because I had “fallen back” in life, despite my stellar education and career. I didn’t even tell then what kind of cancer I had. I can’t imagine that would have made the matter any better for me. My parents were not (or at least pretended not to be) sympathetic to me. I had 4 sisters who also had to get married eventually.

The only way for me to maintain my sanity in this situation was to just leave my identity and history behind. I never returned to my parents’ village. It has been 10 years.

I have to live for myself. It’s painful. I may have beaten cancer and survived, but at what cost? I have a wife and two kids now. I am happy. But they have learned to speak. They ask about their grandparents. I keep evading them. Does not make me feel good. May be when they grow up.

Stigma in the US is more subtle. After being diagnosed with breast cancer several friends acquaintances changed their behavior towards me. One said “You scare me because you were once so healthy and athletic..BC could happen to me.” Some women wanted to know “how much tissue I lost to surgery”??? They stared at my chest. Others quizzed me about what I had ‘done wrong’ to fall from health eg: smoked, HRT, too much alcohol? I felt blamed and as tho’ I had the plague. That on top of treatment was too much stress. I re-treated and became very lonely where I remain today.

Unfortunately it is society’s loss that cancer has gotten such a stigma. Cancer patients, survivors and those close to cancer patients are some of the most creative and talented people.
Having ovarian cancer at nineteen–it wasn’t the first thing you wanted to talk about on your first day at college—so yes, stigma sucks. Survivorship involves so much more than medical care. Don’t ask how many dates or boyfriends I have had that can not handle the whole cancer discussion–yep–it is fearful and I live with that reality daily. It’s a greater fear to think of the millions that will die because of poor medical care, lack of knowledge about treatment, or worse-not having medical coverage or financial support to be able to pay for that care. It’s a choice that I have to make, rent or medical care-sad but true. It’s my reality, I live it everyday. The stigma is there for a reason–it changes everything you do–from seeing the latest movie to buying the highly processed burger or the grass fed one. It influences the friends you make or keep, and yes it influences who will hire you to work for them. The stigma is gladly one I will wear–if one chooses not to invest in my life–their loss. I am a cancer survivor and I’m not done with the world yet.

Julia: I was diagnosed with esophageal cancer
almost two years ago, and I agree with you. The
stigma exists and it does make you feel you are either
being blamed or “PITIED”…take your pick. But I’m
disappointed to hear that you’ve become lonely as
a result…believe me, there are plenty of people
out there that care about cancer patients and
their struggles

I agree with Julia. I am in Australia, where the stigma is somewhat subtle, but still exists. I was diagnosed at 29 with breast cancer. I agree that breast cancer diagnosis seems to give people permission to openly stare at your chest in an attempt to determine what type of surgery you had! Some friends and family totally changed the way they interacted with me…..they all assumed I would die….or worse, they went into denial about the fact that I had cancer. They could not talk about it, or talk to me. I feel that in the eyes of others I am defined by having had cancer (the whispered gossip). People also looked for what I had ‘done wrong’. I had never smoked, always maintained a healthy weight and exercised, was an occasional social drinker, always ate well etc etc and felt somehow blamed for having cancer.

I am currently applying for my first new job post cancer treatment…… and that is like opening up a whole new can of worms!

Things seem pretty good in France. Most people are sympathetic and interested in my treatment for ovarian cancer. However, two friends in America are uneasy about talking or writing to me and an Irish (ex-)friend in France has not spoken to me since the day she heard the diagnosis. I find their attitudes very strange. Surely, they don’t
think I’m contagious. Or maybe they think I’ll die or explode in the middle of a conversation.

I hear you! I too was diagnosed with breast cancer (in March of 2009) and I have experienced the very same thing. I have found that – either women are afraid of me – I guess fearing their own mortality, or they quiz me as well – wanting to know what I must have done wrong to get the disease. It is such an odd situation isn’t? What we need is help, compassion, companionship, support and simply friendship. But, I have found many of the friends whom I thought were my closest, to simply be unavailable. I too am lonely and I too have retreated. It is hard not to, especially when you have experienced this kind of response from women.

Well, I have found some relief in writing a blog, it helps me both in feeling less alone and also in simply being able to get things off my chest (no pun intended – sorry that was a bad joke – I had a bilateral mastectomy this past August). Seriously, though, the blog has helped me a great deal – I NEVER expected the blog to help me feel less lonely, but when I see that people read it (you can view stats and see how many individual views there have been of your blog – and people can comment on your blog – if you let them – I personally allow it, but I moderate it first – in other words, I get to approve the comment for posting), well, it just makes me feel less alone.

I do miss the normality of the life I had before breast cancer. Nothing is the same now. And, I don’t think it ever will be. But, I do hope and pray that it will get better. I hope the same for you.

Anyway, sorry for the long ramble. I long for those days when my friends and family were just, well, normal towards each other.

I will keep you in my thoughts. If you should ever want to contact me directly, you may do so at: cancerfree2b@hotmail.com

The two stigmas about cancer I see often, even in the cancer care and survivor community are as follows:

1) The unsaid opinion that ‘It was your own fault” in some types of cancer. Smoking to lung cancer is a major one, but the one I face is about my skin cancer. the two opinions I see are: a) it’s only ‘baby’ cancer, and b) it’s your fault because you didn’t wear sunscreen as a kid. Growing up ins a sunny place in the early 1970’s I guess it is my fault, but we also were ignorant to the real dangers of sun over-exposure.

2) Two members of my immediate family died sudden of cancer very recently. We’ve gotten comments from people that all but ask “Why didn’t you all fight harder? Why did up give up? You failed. You all did not ‘beat cancer’.” No one wants to hear about the people who die of cancer, and very few people want to step up and address the sadness that is felt by loved ones of those who died.

“The stigma comes in all forms” someone said here. So true. Before I had breast cancer, I would shy away from women who had it, not wanting to say the wrong thing, not knowing what to say, uncomfortable being close to disease and death, ignorant and curious and feeling deficient and stupid all at once, and yes, thinking that somehow it might be contagious, which is absurd . . . . unless it’s not absurd . . .

But guess what. Stigma attaches to other things, too. Things that have no relation whatsoever to anything a person is or has done. For example, I pretty much grew up feeling both ignored and stigmatized by the early death of a sibling which was entirely accidental and had nothing to so with me. Maybe the source of that feeling was mostly deep inside me, alone. But as an adult now, many decades later, I have heard people in my home town say two things, (1) The whole town was shocked by the death of my brother and the circumstances, which put everyone in fear for the lives of their own children, and (2) People really just did not know what to say to me or us. This means we made them uncomfortable. Do uncomfortable people give off “uncomfortable pheromones” that then waft in the breeze between them and “the victim” or “the patient”, the one “closer to death than oneself”? Birds they say attack weak members of the bird community, so birds avoid giving off signals of weakness. We must be like birds to survive, it seems.

So I retreated, often did not inform new acquaintances, kept it quiet. But I felt out of it and lonely nonetheless. It was a kind of existential loneliness, loneliness in a crowd of people. I felt like a wet blanket no matter what I did or did not say. There was always this “thing” hanging over my head and not a day has passed in a half century without thoughts about it. His death has informed my life in a way that others don’t want for themselves.

So now here I am a few decades later and a couple thousand miles away. One of my newer “friends” has often commented about a local man whose first wife died of cancer and whose current wife has breast cancer now. She denies blaming him but nonetheless attributes the situation to hiim – as if there is something about him that brings this on. I have told her directly to knock it off, it is not his fault, but she is not convinced – somehow it is his karma or behavior that brings cancer to his wives. This is insane, in my opinion. So you don’t have to be living in an ignorant backwater third world country to encounter ignorance and the likely stigma that comes with it. I’ll keep this in mind as I go forward. Maybe I’ll be able to come up with something to say that will make a difference. That possibility is a reason to live. Who knows. Best wishes to you all.